Desmoid tumors are noncancerous tumors that grow in the body’s soft tissues. “Intra” means “within,” so intra-abdominal desmoid tumors are tumors that develop within the abdomen.
Intra-abdominal desmoid tumors usually occur in the mesentery, “the tissue that holds your organs into place,” explained Dr. Seth Pollack, the director of the Sarcoma Program at the Lurie Cancer Center and the Steven T. Rosen Professor of Cancer Biology at Northwestern University Feinberg School of Medicine.
Here’s what to know about diagnosing and treating intra-abdominal desmoid tumors.
With an intra-abdominal desmoid tumor, you might first feel like you have a stomachache that may go on to cause severe pain, Dr. Pollack said.
This could be due to a bowel obstruction. Desmoid tumors in the mesentery “can grow into the blood supply that’s really important for your bowels,” Dr. Pollack explained. “Desmoid tumors can be invasive, so they could cause bowel obstructions. They could twist a bowel so that things don’t move smoothly through it.”
Dr. Pollack explained that people with intra-abdominal desmoid tumors sometimes go to the emergency room because they’re in such terrible pain.
It’s important to get care from specialists with desmoid tumor expertise. These providers may be called sarcoma specialists — oncologists who focus on treating sarcomas.
Sarcomas are cancerous tumors that can grow in the bones or soft tissues. Soft tissue sarcomas and desmoid tumors are both types of soft tissue tumors.
When discussing treatment options with your desmoid tumor specialist, talk about your treatment goals and ask what you can expect from each potential treatment plan. Below are some approaches your care team may consider.
Depending on the individual’s circumstances, Dr. Pollack may recommend observing the tumor rather than starting treatment right away.
This approach may be called “active surveillance” or “watchful waiting.” If your desmoid tumor care team recommends this approach, you’ll have periodic scans to check your tumor.
“I do try to watch these patients when I can,” Dr. Pollack explained, adding, “I’m a bit more aggressive with medical therapy for those mesenteric desmoid patients just because I don’t want those tumors to grow.”
Medical therapy may be targeted therapies that are taken as a pill. Chemotherapy can also be an option. These treatments aim to shrink or slow the growth of the tumor.
Dr. Pollack explained that he tends to treat people with targeted therapies more often than chemotherapy. However, he noted that chemotherapy may be a good option for people who have difficulty with oral medications.
People with intra-abdominal desmoid tumors often find it harder to discontinue medical therapy compared to those with other types of desmoid tumors. “It’s always my goal that we’ll get them off therapy,” Dr. Pollack said. “It’s a little bit easier if the tumors shrank a lot while they’re on treatment.”
“Historically, people were very aggressive surgically with desmoid tumors,” Dr. Pollack said. Today, surgery is not usually recommended as a first treatment for desmoid tumors because of the high chance the tumor will recur (return).
“My feeling and our feeling at Northwestern is that we still try to avoid surgery because they have a high recurrence rate,” Dr. Pollack added. Intra-abdominal desmoid tumors in particular can be hard to remove, he noted.
Surgery may be an option for abdominal wall desmoid tumors that have progressed, depending on the circumstances. The decision to undergo surgery should be considered by a group of medical experts from different specialties (a multidisciplinary tumor board).
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